living well with hereditary pancreatitis, type 1 diabetes, and pancreatic cancer​

Whole chunks of my life have been given over to narcotics. When I was first sick with pancreatitis as a child, I was so drugged for months on end that I basically remember none of it. Or I remember tiny sensory details, like the weird modern geometric pattern on the curtains in my rooms at Children’s Hospital in DC. I remember that because I would literally spend days lying in my hospital bed, tracing the pattern with my eyes through my drug haze, trying not to think about my pain or my fear or my guilt or my nausea. I also remember that I would get little sensations in the tips of my dry fingers, where the fingertips meet the nails, like a spontaneous tightening of the skin. Probably also because of the drugs, I thought this sensation meant that God was with me, in the room at that moment, that the skin tightening signaled a divine presence. Honestly, I just needed to latch onto whatever my crazed mind came up with to comfort me.

But I don’t remember conversations with doctors or nurses or the social worker whose visits brightened my days. I don’t remember a single other child from the hospital, although I know I used to play with them in the common rooms. I don’t remember any of my many surgeries or procedures, or the recoveries afterwards, which included such specific medical humiliations as NG tubes and incision staples. Of course, maybe no one really has specific memories from when they were nine years old. And maybe I wouldn’t have remembered this anyway if it had happened at a different time in my life. It’s just odd to me the insignificance of the things I do remember, the things that escaped my drug-induced fog. I remember the slippery tactile feeling of the balloons we kept, deflated and flattened, in my sort of scrapbook about my time in the hospital, but I don’t remember the people who gave them to me. Maybe I’m wrong, but I feel that the drugs are to blame.

Narcotics have been both the necessary evil and the saving grace of my medical saga. There is no way to survive acute or chronic pancreatitis, countless procedures and surgeries, or certainly pancreatic cancer, without painkillers. When they work, they’re the greatest relief you could possibly imagine. You take a pill or push a button on your PCA or get an IV push if you’re lucky, and slowly, your insides turn frothy and everything fuzzes until your edges are indistinct and your pain melts down into some inaccessible place you suddenly don’t worry about. It’s probably not gone, it’s just that you can’t reach it. There’s a buffer between you and the pain, like pillowy quilt batting. This cotton moat fuzzes its way into your brain too, until you forget to even think about your pain anymore. You might remember that there was something bad not that long ago, something that gave you a yucky feeling. But right now all you can get to on the inside is candy fluff and a low, gentle hum of complacency.

But when they don’t quite work, you’re left in the limbo of simultaneous pain and dissociation. When you don’t get enough or the drug isn’t a good fit for you, your pain is still there, persistent and obnoxious, but it’s harder to figure out how you feel about it and what to do about it. You’re left in some kind of suspended state, where you can’t lower yourself down into blissful oblivion, but you’re still far from clear reality. In those times, you hate narcotics, because they’re a tease, because they were supposed to make you feel better but somehow you just feel ickier, or angrier, or sadder.

Also, you inevitably have to deal with the side effects of narcotics, whether they work or not. After a while, the flip side of the coin comes to call and you have to pay up, maybe with constant itching, or with nausea and motion sickness, and certainly with constipation and digestive trouble. Then, the more you take, the more your insides get stopped up, the more your body slows down into something halfway like hibernation. The weird thing, though, is that narcotics actually raise your heart rate. When I’m on painkillers more than just occasionally, my pulse can rarely get below 100. So you’re pushed down into a dreamlike confusion of slowness and fuzzy edges, but your heart is working harder through it all. Really, they’re evil things, opioids.

This is why I’m seriously considering medical marijuana. It’s legal now in Maryland, and the last I heard, the oversight commission is reviewing applications for growers and dispensaries. So it’s not available yet, but it will be before too long. And if anyone ever qualifies for medical cannabis, it’s probably me, with pancreatic cancer pain, chemotherapy side effects, etc. etc. I don’t know much about medical cannabis, or the forms it’ll be available in, but I do have high hopes that it could help relieve my pain and nausea without causing the kinds of burdensome side effects that opioids cause. (It would be nice to have something to treat my pain that doesn’t also render my brain practically inactive, but maybe that’s too much to ask. Because of course, pain is all in the brain, so treating pain from any source requires targeting the brain.) If you know anything about medical cannabis, especially in Maryland, please share it here, for me and for others.

Sometimes, when you have chronic illnesses, it is possible to escape your reality, just for a little while. Sometimes the stars align just enough for you to try something new, live fully, and lose yourself in an experience. In these moments, maybe even these days if you're really lucky, you forget about your illnesses for so long that you can almost believe they're gone.

This weekend, my husband and I went on a brief trip to Brooklyn. We stayed at a trendy hotel in Williamsburg, saw friends in and around the city, ate good food, enjoyed each other's company, and celebrated his birthday. Although certain aspects of my illnesses were present with me throughout the trip (like getting low blood sugar walking around in the heat Friday afternoon, or having to take pain pills each night because the unfamiliar bed hurt my pancreas), I almost felt normal. Even though we talked openly about my cancer and its harsh and boring realities with our friends, I also felt a little bit like my old self, my self before cancer. I could do things, I was capable and game, I was able to stay out late and have a really great time. These are not small accomplishments when you're living with three serious chronic illnesses.

And this respite came just in time, because tomorrow, on my husband's birthday, I am going into the hospital for a procedure that will probably lay me out for a week. Because of the chemo, my platelet count is persistently low, and is currently too low for me to continue my treatment. Also because of the chemo, my spleen is slightly enlarged, and apparently retaining the platelets I need to rebuild my blood count after chemo infusions. As I understand it, the bone marrow produces new blood, and the spleen and liver are stops along that blood's journey throughout your circulatory system. If the spleen gets irritated or inflamed, as mine is, then the new blood can't progress through it correctly. However, some doctors have discovered that certain spleen treatments that patients need in other cases happen to cause a dramatic increase in platelet count. So, this side effect for others is the intended result for me. This means the procedure I'm having isn't standard practice for cases like mine, but is rather a creative and alternative treatment my doctor can offer because he thinks outside the box of standard pancreatic cancer treatment. It's not a dangerous or experimental procedure, it's just not usually used for cases like mine. It's called a splenic artery embolization.

An interventional radiologist will go through the artery in my wrist with a catheter (I presume), snake his way to my spleen, and purposefully block the artery's path into part of my spleen. He's using some kind of a compound that's usually used for brain vascular procedures, which will expand and fill this branch of my splenic artery. Over the next several days, then, about half of my spleen will die from lack of blood supply. This will reduce the overall inflammation and make the spleen release the platelets it's retaining. This has proven so far to be a fairly durable procedure, with stable platelet counts lasting at least a couple years. However, at Johns Hopkins, they've only done this procedure in cases like mine for 12 other people, and none of them have been diabetic. There's a risk of infection after the procedure, either from the procedure itself or from the dying spleen tissue. For me, this risk is increased because being diabetic (especially insulin-dependent) increases your general risk of infection. And then once I start back on chemotherapy, my risk will increase again because chemo depletes your white blood cells (which fight infection). But there's no way to know how great my risk will be. And it appears there's no way for me to continue on any chemotherapy treatment if we can't get my platelets high enough for a sustained period of time.

So, in order to go back on the debilitating treatment that's slowly saving my life, I have to admit myself to the hospital so I can have half of my spleen killed. And then I'll stay overnight in the hospital on a Dilaudid PCA (patient-controlled analgesia) pump, and go home with some kind of narcotic pills to get me through the pain of waiting for half of my spleen to die. This is supposed to take two to seven days. I've given myself seven days off work, and virtually nothing to do but sleep and read during that time (if I'm not too drugged to read). I have friends and family scheduled to visit throughout the week, which will be lovely. I have some soft and gentle food to eat, like chicken stock, apple juice, boxed organic soups, and crackers. I have three much-anticipated books I just checked out from the library, and a couple episodes of The Great British Baking Show saved up.

To be honest, I'm pretty excited about the Dilaudid pump. The last time I had a PCA was when I was nine years old, in Children's Hospital in DC for the acute pancreatitis that eventually turned into recurrent, then chronic pancreatitis, which later led to my diabetes and now my pancreatic cancer. The pump then was morphine, until I had so much of it I could no longer tolerate the severe itching it caused (now I'm morphine-intolerant). Dilaudid, as many with illnesses or injuries know, is the most wonderful of all prescribed drugs, not only because it does give you a lovely high, but more importantly, because it works incredibly well to knock out pain. The low-dose Oxycodone I've been taking for pancreas pain off and on for months now is not nearly as effective. So even though I'm anticipating brand-new severe abdominal pain from my poor dying spleen, I'm relieved to know that I'll be getting enough of the good stuff to wipe the pain away.

So I'm prepared, and I don't think it will be terrible overall. But really, this whole situation is ridiculous. I'm intentionally killing half of one of my organs, just so I can keep sucking in more poison. This is the life of the cancer patient.